Finally@45

About Me

Celiac symptoms since childhood, with no diagnoses til age 45
Confirmed Celiac diagnoses summer 2011
Gluten-free since summer 2011
Severely corn intolerant June 2012
Grain-free since June 2012
Just enough Irish genes to put up a fight and beat all of the above.

I just reached my 1 year anniversary. I thought I'd share a few funny things that happened. I have teens who were with me on many of these events, so you can imagine the number of times I've reheard the stories with rolls of laughter.

1. Me: Do you have a gluten-free menu?Waitress: No, we don't charge for you to see the menu.

2. Me: Would you happen to have an ingredient or allergen list for your products?Waiter: Such as...Me: You know, like when a person is allergic to peanuts or wheat...Waiter: Oh you want to know if we have oats in our food?(I never figured this one out, we assumed he must have had someone before me who asked about oats and wheat in the same question.)

4. Family member: What is celiac?[I answered the question]Family member: Does that mean you can't eat meat?

5. Family member: So what DO you eat?[I answered the question with emphasis on unprocessed meat, vegetables, fruit, yogurt, rice, potatoes, and so on.]Family member: What store do you go to..cause I don't eat any of those things....

6. Another family member chimes in: Oh I see gluten-free products at the store all of the time.Me: Yes, times have gotten better for Celiacs.Family member: You mean this has been going on for years?

7. Family member: Did you get the kids tested too?Me: Yes... they don't have it.Family member: Thank God, they can be normal.

8. Me: [In MoMs Organic Market asking for gluten-free lip gloss]Clerk: I'm glad I could help. Someone else came in here looking for gluten-free products... if you don't mind... what happens if you eat gluten?Me: [I gave some symptoms, but emphasized everyone can have different experiences.]Clerk: Does that mean you could kiss someone and give it to them?

9: Me: [In Bare Minerals, mentioning that it's nice to know their entire product line is gluten-free.]Clerk: Oh you have cancer?! We get a lot of cancer patients.

10: And the mother of them all-Me: I'll take the burger with no bun from the gluten-free menu. [and I pointed at it]Waiter: Ok, that'll be a burger.Me: From the gluten-free menu right?Waiter: Oh yeah sure.[The burger comes out on a bun.]Me: I don't think this is gluten-free.Waiter: It is...[He ends up getting the manager.]Manager: Is there a problem with your gluten-free burger?Me: Yes, it's on bread.Manager: [Whips it away, has the cook start over.]Waiter: Sorry about that, I thought gluten was lettuce or something.

My triglycerides are practically non-existant and I see from a search of the site that others have commented on both low and high results. I hate to ask this question at the risk of sounding whiny over something that most people struggle at the opposite end of the spectrum, but I can't find anything saying whether an extremely low triglyceride level indicates a poor/unhealthy fat absorption. However, the lit does say that people who drink alcohol and eat a lot of carbs have higher triglycerides. So is it better to view a low triglyceride level as more than just a fat intake issue?

To the person who asked about how do you know if the diet is working just before my post:
My Vit D (fat soluble) levels have gradually increased after being on the diet for a year. That's been my best objective indicator. I also gained a little weight, though that's certainly not an indicator for all Celiacs.

More subjective or maybe objective, I haven't thrown up in a really, really, really long time, maybe a year. Clearer thinking. Softer skin. Far, far, far less nausea. Less joint pain. (Joint pain and nausea are the first symptoms I get if I eat crosscontaminated products.) Better energy, though I would like to not get fatigued so easily with strenuous exercise. Surprisingly, my eyes used to feel sensitive, that all went away.

The more I stick to the diet, the easier it is to tell if I'm sick. I've learned what normal feels like.

BUT - if your throat swells up when you have caramel color, that is not an intolerance symptom, but a true allergy symptom. You MUST avoid corn, please, because the next time you have it you may get a true allergic reaction and DIE. Don't mess with it.

The doctor agrees with you that corn will kill me if I keep trying to eat it. Thanks, you encouraged me to get in with the doctor immediately the day you posted.

Sometimes the things that are most obvious to us in life are the very things we choose not to see!

This is definitely depressing and I seemed to have been getting so well, then out of the blue these other symptoms come up.

The doctor had a corn allergy test done (blood test, not the skin prick), with little expectation that it will prove anything. She agrees with a lot of the literature that corn allergy and intolerance tests are not developed to detect corn gluten senstivity and gave me the firm sermon that I'd have to let go of corn too since my symptoms are so severe, particularly since I'm having signs of anaphylaxis with carmel color. She agreed that the reason my symptoms seemed to quadruple all of a sudden is likely because my intake of other grains allowed on the gluten-free diet increased significantly.

I can't remember where I read this, but I do recall that when I was first diagnosed and tried to read every book I could find, that one of the books warned newly diagnosed Celiacs not to go crazy eating the gluten-free products such as the cereals, cookies, breads, etc. because you'd want to deal with one problem first before stirring up another....some Celiacs don't know they are intolerant to multiple grains right away... so take it easy. Well I wish I had listened to that advice now!

As suggested, I'm checking into the Paleo diet and watching the Dr. Osborne videos on YouTube. This is a HARD diet to follow! gluten-free is a piece of cake, no pun intended, compared to grain free. Corn is in so many products and additives, it's crazy. I might as well get a job at Whole Foods, cause that's where I spend my spare time lately.

Certainly a lifestyle change. Eating out isn't bad, at least you can scope the menu in advance and choose other places. But being at a family/friend event and having people look at you weird because you refuse to eat practically everything but fresh, unadulterated fruits,nuts, veges, and meats,is another story. May be easier to claim I'm a healthfood freak. I think some people assume a person who lists multiple food problems is being crazy; too bad.

All good responses. I tend not to be a sarcastic person and I'm pretty modest. I'll have to work harder at not being so sensitive!

When a person is struggling with their weight and they see a thin person who seems to "have it so easy"...especially if their comments seem riddled with jealousy, they need to be reminded that there is so much more to our relationships than judging how the other looks (or eats).

To my fellow Celiacs on the thin side, I didn't get the big butt or boobs gene either(correct, I can't sit on a hard surface for long!) Those genes, those genes. They even decide where the fat goes. Better to accentuate the positive than dwell on the negative.

I posted one message on the Super Sensitive Forum, it seemed polite to post one here too!

I am 45 years-old, female, and of mixed-race ancestry. I have been "sick" literally for as long as I can remember. By chance, I stumbled upon a website that mentioned how some people with undiagnosed Celiac Disease have trouble digesting some foods that have no gluten, making it that much harder to identify. I decided to experiment with a gluten-free diet, got tested, and here I am.

If there are stages, much like mourning, to being diagnosed with something after going a lifetime of dealing with remarks from people, fatigued, painful joints, and mysteriously having intestinal distress out-of-the-blue, I am sure I'm going through those stages.

First, there's a feeling of relief... finally there's a condition that ties all of your symptoms together.
Second, there's a spirit of "socially fitting in" as you realize there are hundreds of websites for the Celiac community.
Third, there's a social justice spark as you consider writing a blog or sending e-mail blasts to your family because you just KNOW so-and-so must have it too.
Fourth, there's a parental guilt as you realize the kids have to be tested too...and what if they've had it all along?
Fifth, for women with high risk pregnancies, there's even more parental guilt and anger that OB-GYN's don't have some sort of list for you to peruse or tests for celiac disease as potential causes of problems in pregnancy.
Sixth, you laugh as you have your first experience of someone asking, "Gluten what?" "Does that mean you have diabetes?"
Seventh, you become paranoid about eating out at a restaurant you haven't had a chance to "review" yet.
Eighth, there's frustration about all the time lost dealing with the symptoms and if you're as old as I am, you realize you may have had more years without a diagnosis than years left with a diagnosis.
Ninth, you remember those worse times you felt like crap and how it interfered with something else you needed to do. Then, you realize it must have been celiac disease. You cry. (The thought of PE in grade school is so emotional for me, and to think I could have had a better experience had the numerous doctors my mother sent me to had a clue.)
Tenth, you remember all that pizza and spaghetti you ate....aargh. More tears.
Eleventh, you want to scream. So you do.
Twelth, you resolve to pick up the pieces, thank God for leading you, and move on.